Now It Begins

Washington DC

I have been diagnosed with a progressive “mild cognitive impairment,” almost certainly Alzheimer’s disease.  The neurologist told me the diagnosis last September, but I’ve waited  to begin this blog until now when  my symptoms are becoming noticeable to others. (You can find all the previous posts in the blog’s archives [bottom left] or by going to my website where I’ll keep all the posts in a few documents for those who want to read the whole story in chronological order.

Actually, I’d been noticing symptoms for a while but was still surprised by my doctor’s diagnosis.  Over the past several years, my memory has significantly declined.   This is a common complaint for people as they age.  For 20 years before he died, for instance, almost every time we visited, my father asked again for reassurance that he didn’t have Alzheimer’s  His memory loss, like many other older people’s, was mostly for names and faces.  I’ve always had that kind of poor memory, but I began losing memory in other areas as well.  Two years ago, an entire trip to a rural area southern Virginia disappeared from my memory.  I drove down to visit my friend Jens Soering in the prison to which he had previously been moved.  I could have sworn I was going down for the first time.  In fact, I’d been there before several months earlier.

I chalked it up to a single bizarre experience that would probably not mean much to a doctor, so I didn’t do anything except tell the story to friends.

Some months later, I couldn’t recreate a computer spreadsheet formula that I’d written several years earlier.  In fact, when I went back and examined the formula from an old spreadsheet, I couldn’t even understand what I’d done.  Such calculation difficulties persisted.  I went to a neurologist in the fall of 2011 for testing and he said that I did have a cognitive impairment but that it wasn’t severe and the relevant point was whether it was progressive.  I returned last fall (2012) and, yes, the impairment had progressed.  There aren’t too many likely candidates for causes for progressive cognitive impairment.  The neurologist performed tests for them: they were all negative.  There is no certain test for Alzheimer’s except to rule out these other candidates, so the overwhelming likelihood is that I have early Alzheimer’s disease.

Since last fall, the disease has progressed.  My memory is much less reliable.  I’ve had trouble finding words, especially in Finnish as my wife Marja and I try to converse but also quite noticeably in English.  Both my daughters, Laurel and Karin, recognized in retrospect that it took me longer to do certain tasks.  That slowness in figuring things has gotten worse, too.  While I can still eventually do most computer tasks, they can take a long time, and I can get confused easily.  I’ve even had two experiences of being in locations that should have been quite familiar but, in fact, I didn’t really know where I was or how to get where I was going. 

I’ve been apathetic about writing and about my website these last several years.  I’m somewhat less interested in politics; for example, I couldn’t sit through the presidential debates last fall.  (Some of you may feel that the only mentally healthy response to the debates is to turn them off, but it’s never been true for this political junkie.)  Perhaps I’m just looking for an excuse, but I’d like to believe that this disease is at least predominantly responsible. 

So, while there is always a chance that it’s something else, my neurologist and I are pretty certain that it’s Alzheimer’s.    So far, the symptoms have been limited.  I can still write well, although you may have noticed that my essays have been less frequent lately.  When I type, I frequently leave out words and phrases (which I hope I’ll edit out before I actually put my posts up).  I’m still teaching in small groups, still doing the books for my church, still mentoring some others. Up till now, I’ve noticed my mistakes well before others do.  My judgment seems unimpaired.  My life goes on.

It seems paradoxical, but Marja and I are actually doing quite well.  In fact, I’ve noticed some positive changes in my ways of thinking and acting.  I’m more emotionally open.  I’m less insistent on maintaining my image as prophetic voice or incisive writer.  I don’t need to prove myself with new accomplishments.  For the first time, Marja and I have allowed ourselves to look back on our lives with satisfaction and gratitude.  I’m more vulnerable to other people and have been experiencing an extraordinary closeness to some people that I would never have thought possible.  While it seems crazy to say it, so far my life has been better … happier … than before this disease.  I have no illusion about what’s coming, but, up until now, it’s been good. 

Garrison Keillor said recently, “Nothing bad ever happens to writers; it’s all material.”  So, at least for a time, this Alzheimer’s disease will become material for my website and for this blog.  I want to write about what Alzheimer’s is like from the inside.  What is the experience of losing one’s mind?  Do I still experience myself as the same “self”?  Obviously, I don’t know how long I can do this, although my good friend Carol Marsh has volunteered to keep it going with interviews when I can no longer write.  We’ll have to see.   

I had a number of scenarios for my death.  This wasn’t one of them.  But now, I have pictures in my mind of lying drugged and incontinent in some nursing home.  I don’t want friends and family to remember me as that old guy babbling on the couch.  I’m afraid of the uncontrollable rages that sometimes accompany this disease.  Mostly, I think, I’m afraid of abandonment as I become one who can’t hold up his part of the conversation.  I’m afraid that--except for Marja--my family or even very close friends will abandon me (even though I know intellectually that these are irrational thoughts), but it’s not paranoia to think that the quality of relationship will isolate me. 

But it’s not only fear that we have about Alzheimer’s.  It’s also embarrassment.  What do we say to the guy has just repeated himself for the third time in five minutes?  Several years ago our community  invited to Washington a writer whose books had brought great change to our lives.   But he had Alzheimer’s that had progressed significantly.  I’m not proud to say that I had no use for him.  Why had we invited a man who could hardly follow a conversation?  (After my experience so far, I suspect he did understand at a non-cognitive level and honoring him was well worth our effort.)

So part of my reason for this blog is to address that fear and embarrassment.  I’ve been frank and transparent with my family and my community because I want us to work together to teach each other about this disease and how to respond to it.  I want to discover what friends (or even just acquaintances) can do to understand this illness and not have to abandon me.  Perhaps I can take some fear away.  .   

I’ve been writing “posts” since September but haven’t wanted to publish them until now.  I’m not sure how many people will want to go back and read those many posts, but I think that just putting them here on a blog will almost certainly bury them too deeply and discourage anyone from reading the whole story.  So, for those who do want to go back, I’ve compiled them in chronological order and put them on my website.  I will continue to do that as the archives expand.  I’ve also written a short autobiography that, I hope, will give you the chance to know who I was and, therefore, what I’ve lost. 

These have actually been wonderful months!  I want to follow it out.  I hope some of you will want to join me.